Great difficulties to open the mouth.

[LuisRodicioRodicio]

After 8 years living with PSP and for about 1 month we have observed increasing difficulties in providing food (in pure form or in a very soft texture) due to the fact that the jaw hardly moves to open the mouth. With much difficulty and care, we force the food into the mouth with the teaspoon. So little by little and with a lot of time (we can take around an hour or more) we can feed her.

We try to avoid PEG.

Has anyone positive experience with this problem and managed to improve the situation with a trick?

Thank you.

Luis

[wear1947]

Dear Luis, try with Botox!

Inject Botox in the muscles that control the movement.

The amount of Botox and the site of application is a matter of experiment.

We use Botox with my sister for the eye's lids .

The neurologist has had to change the inoculation site.

Big hug!

Elena

[LuisRodicioRodicio in reply to wear1947]

Thank you.

Luis

[NannaB]

Sorry I couldn’t find any tricks to help my husband eat. We avoided the PEG until 2 years after it was first recommended by the Hospice. My husband changed his mind (using thumbs up when asked if he thought it time) when a pressure sore would not heal and he was losing lots of weight as he wasn’t eating or drinking enough. He was also suffering from constipation. Once the PEG was fitted everything improved, the sore healed quickly and he even put on weight. For months it had taken him nearly 2 hours to eat a liquidised meal. With a PEG we could go out several times a week and even go into restaurants with friends as my darling had a pump in a back pack on his wheelchair so I no longer had to feed him. At home I gave him the feed with a syringe. Right up until the end he could still enjoy ice cream by mouth and loved Bailey’s poured over it. A bit messy but he loved it.

Best wishes

XxxX

[Karynleitner in reply to NannaB]

Can you tell me how long he lived with the peg and how difficult it was to care for? My husband can eat and swallow soft foods and thickened liquids. He does get upper chest congestion and an awful gurgling. He does not clear his throat or cough with any strength.

He eats, but not enough. Some days liquid intake is good, some days not. Everyday I spend half of each day trying to get him to drink. A peg may be in our future.

[NannaB in reply to Karynleitner]

It’s so hard isn’t it. Colin lived for 10 months after having the PEG fitted but could have gone on for much longer. He decided he had had enough and wanted to me to let him go. He did this by pulling on the PEG tube with one finger while I was feeding him, making it difficult. It was a few minutes before I asked him if he was asking me to stop and his thumb went up. I called the GP who came and asked if he’d had enough of life as it was and again his thumb went up. He asked several more questions and then told me it was Colin’s decision and I could stop feeding him. Two days later he indicated he didn’t want liquid so I just did mouth care, spraying a little water to keep it moist. It was the most peaceful 11 days we had had for 6 years. All our friends and family came to see him and he was able to squeeze all of their hands. When he died he wasn’t on any medication at all. There was morphine ready here but he indicated he didn’t need it. He had no chest infections, pressure sores etc and was able to communicate with thumbs up until 2 days before. That evening he went to sleep and didn’t wake again. 2 days later I told him I loved him, thanked him for the happy 44 years we had been married and said I would be OK and it was time to go. He left me within 2 hours..

Fitting the PEG in hospital only took 20 minutes under local anaesthetic. I found it very easy to use. The district nurse gave me a training session. The food goes via a syringe into the stomach and it’s just a case of flushing through with water to keep the tube clear. I also had a pump which did the feeding for me but Colin liked the contact of me next to him so I often used the syringe at home. It was great going out though as the pump fitted into a rucksack on his wheelchair. I saw a photo of him yesterday exactly 3 weeks before he died, taken on Hastings beach where we spent the day with my brother and his wife.

It was his decision to have it fitted and when asked weeks later if he was pleased he had made the decision, thumbs went up.

Best wishes.

XxxX

[LuisRodicioRodicio in reply to NannaB]

Hi NannaB!

Thank you for sharing these hard experiences that I think help those of us who have to go through there.

A big hug.

Luis

[Pinkcamelia in reply to NannaB]

My heart was breaking reading your story. But what I can take away from this is, it was so full of love.

[Megabrew88]

Hi Luis,

What about using a syringe to feed her.

Sorry not much help here as we didn’t encounter this problem until the last week when my B refuses to open to eat and would bite or clamped on the spoon to express his unwillingness to eat.

Best of luck and stay strong.

Mx

[LuisRodicioRodicio in reply to Megabrew88]

Thank you

Luis

[ncgardener799]

Our neurologist has discussed Botox for several problems associated with PSP. So far we have not needed to initiate using Botox, but it is an option our Dr has offered if needed at a later time.

[LuisRodicioRodicio in reply to ncgardener799]

Thank you ncgardener799.

Luis

[Nanny857]

Fortunately we didn't encounter this difficulty as W had indicated he didn't want peg fed.

I was going to suggest feeding by syringe and I see others have too, so maybe worth a try. I hope you find a solution.

Thinking of you.

Lots of love, Nanny857xx

[LuisRodicioRodicio]

Thank you Nanny.

Hug.

Luis

[Caninedoc]

Same situation here. My wife started about 9 months ago with a progressive inability to open her mouth. Is receiving Botox now every three months. Haven’t found correct dose yet but does help for a few weeks. Only able to open mouth about 5 mm. Past two years tube feeding. Started with peg tube then after six months we place a mickee tube which I would recommend instead of peg. Two yrs ago severe dysphasia and weight loss. Even with puréed food would take me at least 2 hours each feeding. I asked my wife that she has two options either we place a tube or continue as we are and you won’t be here within 6 months. She chose the tube. She is doing well on her nutrition now and has gained her weight back

[LuisRodicioRodicio]

Hi Caninedoc!

Thank you for sharing your experiences that I will keep in mind.

Hug and luck.

Luis

[raincitygirl]

Luis, I have no advice but wanted to send empathy. Sorry things are getting worse.

Hugs,

Anne G.

[LuisRodicioRodicio in reply to raincitygirl]

Thank you Anne.

Big hug.

Luis